Chronic illness – Learning not to smile and say the lie that is, “I’m fine.”

I read an excellent article yesterday, written by Katie Willard Virant and published on the Psychology Today site, in which she argues that those of us with chronic illness can learn a lot from the #MeToo Movement. You can find the article here.

She asks, “Can we learn from the bravery of the #metoo participants and speak of our painful experiences in a world where many wish we would stay silent?”

Yes, we must learn to find our voices and share our stories. We must learn to stand up and shout “Chronic Illness? Yeah, #MeToo.”

Except…I won’t. Not yet.

The truth is, I’m just not that strong enough. It takes so much effort sometimes to just to get through the day, without sticking my head over the parapet to say, “Yeah, #MeToo.”

we should all be able to stand up, to tell our stories

Don’t get me wrong, I strongly believe that we should all be able to stand up, to tell our stories and, most importantly, be listened to.

But, I’m just not that strong enough. Not Yet.

In the article, Katie Willard Virant talks about The Blamers, The Shamers, and the Disbelievers. They’re bloody everywhere. I know exactly what she’s talking about and I don’t really talk to people about my illness. Friends and neighbours are in the dark about my fibromyalgia. Yeah but – I can hear some of you say – you’re telling the whole world, via your blog, that you have Fibromyalgia.

I am.

But this is easy. You’re not facing me. I don’t have to hear your responses. I don’t have to see your face. I’m not going to be let down. And, I don’t have to respond to “The Blamers, The Shamers” or “the disbelievers” here, not if I don’t want to. I’m in control.

I’m just not that strong enough. Not Yet.

Out there, that’s where the fun starts. I haven’t trusted many people with my secret, out there, in the real world. But I’ve encountered some, especially in the early days of my diagnosis, when I was naive and thought certain people, who I believed I was close to, would understand. I’ve had the “you’re just not eating the right kind of food,” comment from someone I opened up to. Another person said, “Oh, Fibromyalgia? Yeah, that’s very trendy now, isn’t it? Really, that’s what doctors say when they don’t know what’s wrong. It’s not real.”

Yeah.

I’m so trendy. I want to be so now.

No. I’m not a f^^king fashionista who wants to be bang on trend. And I’m not some eyebrows that are “on fleek”. And this pain? Not real?

Yeah, ok. So, it’s in my imagination when I can’t walk the dog, when my body feels like it’s on fire, or when I can’t go out because it’s just. Too. Much…

I won’t tell you any more about my pain. That would be too boring. And an inconvenience. You don’t want to know about my pain. You just want me to smile and say, “yeah, I’m fine.”

But you know what’s even worse? What makes me feel ashamed? It’s when I agree with them in the conversation. Not because I believe what they’re saying (I don’t. My pain is VERY real), it’s because I don’t want to be a nuisance. I want to shut the conversation down. I want to climb back into me.

just…smile and say, “yeah, I’m fine.”

I don’t talk about personal things to people. They usually let you down. (Don’t worry, I have fantastic support from a few special people. YOU KNOW WHO YOU ARE. And I love and appreciate them for it). I have had people who should know better turn away from me. But not my hubby. He has my back. Without him and a few other people, I would be absolutely stuffed.

But still, I’m quiet.

People have, in the past, told me that I just don’t know how to handle pain. That I’m attention seeking. The silent implications of their words are written large; you don’t matter, you are a nuisance, will you just shut up?

But still, I’m quiet.

When I saw my CBT Counsellor because I was frustrated and felt that no one was taking me seriously in the medical profession, that they thought I was somehow making it up, he asked me why I thought that was? I didn’t know. Then, he asked what my level of pain was at that point, sitting in front of him, from 1 (the least pain) to 10 (the most pain). I said, around a 9. “And yet, you have a smile on your face. You look well.” He did believe me. He was making a point. It was then, after a lengthy conversation, that he made me realise that I was very good at wearing a mask, to make other people happy by not saying what I was feeling.

I’m too much of an inconvenience.

So, I’m quiet.

I’m not good asking for help. I’m not good at telling people what’s going on, and I’m not good at standing up for myself, but I’m bloody good at masking the pain.

AND I need to STOP.

I am worth it. And you are worth it too.

I will stand up and say #MeToo for chronic illness.

But not yet.

You see, I’m still learning. And it’s not something I’m good at. After years of hiding, of being quiet, it takes courage to stand up and say “me too”.

But I’m getting there.

Slowly.

BUT, I am getting there.

Until then, I have #MyTribe. Small in number, but big in support, and to them, I say thank you!